She has had Early Onset Alzheimer’s for several years, but still drives to familiar places. I met Marianne in a writing class and we decided to have lunch at Saxby’s by her home She consented to let me interview her at her home because there was too much noise at the restaurant she said. After the lunch, we drove our two cars to her charming home. She shares this home with her working younger second husband. In the garden a dozen or so trolls from Holland add color. Decorations hang from her fragrant camphor tree in the middle of the front yard.
Inside the home I met her four-pound poodle appropriately named “Peanut”. Marianne collects seashells, and giraffe figurines. Her abstract paintings done in an Alzheimer’s painting class adorn the walls. After this tour of her lovely home and gardens, we sat down for the interview and I was quickly impressed with her life and her total acceptance of her dementia and all the ramifications.
Carol: Tell me about your charming accent.
Marianne: I actually speak four languages-- English, Dutch, Spanish and French. I can understand German as my first husband worked on computers in Germany.
Carol: Where exactly were you born?
Marianne: Aruba, but my family background is Dutch. Aruba is officially one constituent of the Kingdom of the Netherlands, which appoints a governor for six years.
Carol: How did you get to Aruba then from Holland or the Netherlands? And to America?
Marianne: After WW II my parents moved to the island of Aruba—one at a time—my dad first for three years until he could send for my mom and marry her there in Aruba. Letters sailed from Holland to Aruba over the ocean while they courted. After three years dad sent for mom who boarded a ship to marry in this Dutch West Indies country. I am the oldest of their children. At the age of nineteen I married an American and we moved to America where I now have a green card. My parents and three siblings moved back to Holland when my dad retired where my youngest sister finished her high school education. I am able to visit them from time to time.
Carol: In brief what has your life been like in America?
Marianne: I miscarried twins my first marriage and eventually after nineteen years we grew apart; I became strong and initiated the divorce. My career has been as a LPN nurse. Then I met my second husband, six years younger than I am, and he had a two-year-old daughter that I raised as my own. Today she is the daughter I never had and she lives in Colorado Springs.
Carol: Did anyone in your family have dementia?
Marianne: My grandma on my father’s side may have had Alzheimer’s, but no one knows for sure.
Carol: Did your husband discover the memory issues?
Marianne: Actually no. When we lived in Pennsylvania, I did insurance physicals. My employer here in Florida actually discovered my Alzheimer’s. I was working in a Florida nursing home where they do have an Alzheimer’s wing, and very aware of the problems of those senior citizens. Somehow I had difficulty distributing the medicine with a cart for thirty patients. I didn’t remember who had what medicine. My supervisors noticed my problems. So it was that the facility doctor gave me a prescription that said I shouldn’t work. I did try home health care for a while after that. I did not work at all in 2012 and last year in 2013 I qualified for disability.
Marianne: I drive to familiar places and use a GPS in case I need to punch go home. I still cook, clean and buy groceries, but I have to have a grocery list. I remember being at a clubhouse meeting two years ago and not being able to find my seat with my husband until he came to get me. I had that "lost look". If I am home I am okay. I like home. I found this plaque and it reminded me of Pennsylvania when we were just 45 minutes away from that plane that went down in September of 2011.
Carol: You are so knowledgeable about your Early Onset Alzheimer’s. I understand you have a girlfriend who also has it and you discuss it together.
Marianne: Yes—she is my dear friend and we talk Alzheimer’s together—I study it a lot. We want to be in the same room in a nursing home if we need to go there. Her mom also had Early Onset Alzheimer’s.
Carol: You are writing many things from the past while you have that memory in the class we are taking. How does your short-term memory hinder you now?
Marianne: At this point sometimes I just don’t remember that I repeat myself.
Carol: What message do you want people to know?
Marianne: Communicate, people, while you can! I am done with lack of communication. I want my loved ones to call. I want my sister to call me. My brother from Holland does call. I enjoy my daughter calling. People can and do talk with me about Early Onset Alzheimer’s.
Carol: Yes, I learned with my husband that loving emotions do last. They want people contact. I have to say, Marianne, that you are an awesome spokesperson and an inspiration to others. Did it upset you to find out about your diagnosis?
Marianne: I had two 45-minute crying spells about a year apart, and that was it. Now I am living my life.
Carol: What activities do you enjoy now?
Marianne: I paint. [She showed me the bedroom where she does this—her studio.] Many Saturdays my husband and I go to the beach. On Fridays I volunteer at Compassionate House distributing food and clothing. My husband and I are taking a one-week missions trip to Guatemala with our church group in August. I will be working with the babies there. In February we went to Aruba for two weeks. We visited Holland. We still camp and we enjoy our church. I agree with this sign I had to buy. It grabbed me when I saw it.
Around home is where your journey begins the sign reads:
DO YOUR BEST
BLAZE A TRAIL
FEEL YOUR SOUL
NEVER STOP LEARNING
Carol: Have you and your husband been realistic about the course of this disease?
Marianne: Well, I got a bracelet that identifies me in case I wander. I have charms on it and my husband made it so I cannot remove it. He has one as well identifying him as a caregiver. And, we have all of our legal paper work done and we are not afraid to talk about this disease.
This interview inspired our whole writers’ group. Marianne plans to be around, folks, and continue living her life. We all love you, Marianne.